Spirit! Magazine wants to hear from you! Views from our Shoes was created to give you, the readers, an opportunity to seek advice and share the tips that work best for you and your disabled child. Please e-mail your questions or answers to editor@spiritmag.org,
or send them to: Spirit! Magazine 48 Scotland Hill Road, Chestnut Ridge, NY 10977, and let us know where you are writing from. Whatever the disability or challenge that your child faces, this is your forum to exchange suggestions and ideas, or seek solutions to situations from others in “your shoes.”
I have 8-year-old identical twin girls. One of them had meningitis in infancy, which left her deaf. They are in the same school and look like two peas in a pod: thin, tall, and breathtakingly beautiful, capturing the eyes and interest of the entire student body.
The twin that’s deaf naturally needs loads of intervention, therapy, and care, and she is the center of the class attention.
Her twin sister is having a very difficult time with all the attention and care her sister gets. Being that I live in a small community, with only one Jewish school and no parallel classes, separating them is not an option. Has anyone ever been in this situation, and does anyone have advice on how to deal with the jealous twin? This situation is having an affect on her social and emotional well-being.
In our previous issue, the following situations were presented. We’re pleased to bring you responses from readers in “our shoes.”
Dear Editor,
I look forward to each and every issue and read it cover-to-cover as soon as it arrives.
My daughter, age 8, has a diagnosis of autism and seizures, which started at the same time that she got her MMR shot. Soon after the shot, she got her first seizure. Since that time, she has lost most of her speech, eye contact, and other vital function.
I’ve discussed the matter with two neurologists and my pediatrician. They all claim my daughter had a predisposition to autism, and the high fever she had following the shots was just the trigger. My argument is that had she not received the shots, her autism wouldn’t have been ‘triggered,’ and she’d have remained healthy. The doctors claim that any mild illness would have brought it on. Others say the timing is coincidental, as autism generally rears its ugly head at 15-19 months, which is the time the vaccines are given.
I now have an 18-month-old daughter, and I’ve refused to let her have vaccinations. The school she will attend, IYH, will not accept unvaccinated children.
I’m not seeking to bring up the world-wide debate linking vaccines to autism. I am seeking advice on how to deal with the school district, as it is mandatory to have all children vaccinated prior to school attendance. The school will not accept her unvaccinated. How do parents who don’t vaccinate deal with the system?
C.L.
Dear C.L.
I, too, was faced with the problem of how to enroll an unvaccinated child into school. My two oldest boys each had severe reactions to the DPT shot at two months; years later, they were both diagnosed with high-functioning autism spectrum disorders. Since my daughter did not have a reaction, and did not develop ASD, I wondered whether the vaccines my have had a trigger effect upon a genetic predisposition within the family for ASD. I agonized over what to do about my youngest son. My family doctor signed a letter for me stating that, due to neurological disorders and significant immunization reactions within the family, he recommended against vaccinating this child before the age of 6. That letter was adequate for his preschool years, and it gave me more time to consider what to do.
When my son was 5, and I had to make a decision, I discussed the pros and cons with my pediatrician, who was very understanding. Ultimately, I chose not to vaccinate and I filed for an exception. I contacted Patricia Finn, an attorney in Sparkill, NY, who specializes in immunization law. She drew up a religious exemption for me, based upon the Jewish concept of guarding our health. I provided copies of it to my son's pediatrician, yeshiva, and summer camp, with no questions asked. Should it ever be challenged, my attorney is available to answer any questions about it, as part of the service she provides.
Shoshana Stubin
Passaic, NJ
Dear CL,
Enclosed, please find some information from the NYS Department of Health regarding immunization exemptions. I got this information in February 2004, so there may be new rulings since then. You can get more current information at the following Web sites:
www.health.state.ny.us/prevention/immunization/index.htm, www.cdc.gov/nip You could also try calling the National Immunization Information Hotline (800) 232-2522
• Medical Exemption – a certificate from a physician, licensed to practice medicine in NY State, specifying that one or more of the required immunizations may be detrimental to the child’s health. This certificate must state which vaccine is contraindicated.
• Religious Exemption - a written, signed statement from the parent or guardian of the child, stating his or her sincere and genuine religious belief, which prohibits the child from being immunized. The principal or person in charge may require supporting documentation.
Hope this helps!
HN
New York, NY
Editor’s note: the accompanying NYS guideline sheet has been forwarded to CL. Thank you, HN, for taking the time to print it for her.
Dear Editors,
I find myself reading your magazine with increasing frequency lately, and I always derive tremendous chizuk to help me deal with two of my sons, ages 3.5 and 5.5. My younger son, Shmuel, has an autism spectrum disorder, and on the advice of a clinical nutritionist, I just put him on the GFCF (gluten- and casein-free) diet. The nutritionist also restricted his consumption of corn, soy, and foods containing phenols and salicylates, and she gave me a urine test kit and hair test kit to send to the laboratory. She wants me to collect his first morning urine, and she gave me a bag with which to collect it. As my son is not toilet-trained, this has proven very difficult, and I spent an exasperating morning trying to get him to urinate into a sterile cup before he had anything to eat. Can you offer any practical advice on how to deal with this problem?
Laurie Minchenberg
Dear Laurie,
When my daughter was younger, we needed to collect samples on a regular basis. Here are some ideas that worked for us:
Most kids tend to “go” between 3 a.m. and 6 a.m. Try to figure out when he usually goes and put the bag on about a half-hour before. It’s easier to put on when they’re sleeping and then, when he wakes up, remove the bag right away.
If the bag keeps falling off, there’s an adhesive that can be painted on, but it’s then harder to remove the bag once he’s filled it. You can try and see if he will sit on a potty right when he wakes up. If you clean the collection cup with bleach before he sits, you can just pour the urine straight into the collection cup (just check with the doctor to see if that is okay). Hope this helps!
HN
New York, NY
Dear Editors,
I’m a mother of two children with developmental disabilities. I am involved in various online support groups, and I attend a local MDA support group. I am looking for online frum support groups, or phone support. The women I network with are wonderful moms with loads to offer, but they do not understand certain issues that we, as frum parents, sometimes face. Whether it’s not being able to take a wheelchair-bound child out on Shabbos, or dealing with various care appliances on Shabbos and Yom Tov, or the challenge of providing a Jewish education for an intelligent child who happens to have multiple disabilities.
Thanks for a magazine that fills a need that the frum, developmentally disabled community has dealt with for so long. If anyone has any advice, I would really appreciate it.
Editor’s note: There is a wonderful e-mail support group with over 75 frum moms registered. You can sign up at http://groups.yahoo.com/group/specialfrummoms or send e-mail to specialfrummoms@yahoogroups.com.
Dear Mom looking for frum support.
I recently came across a fast-growing, frum Web site called www.frumsupport.com. Check it out; it may be very beneficial to you.
S.T.
Dear Spirit! Magazine,
My daughter is 6 years old. She was born 16 weeks premature and has significant motor delays. My daughter’s physical therapists feel she would benefit from a modified Kidcart with lots of support. I am having major issues letting them order the wheelchair, as I am just not ready to walk in the street with a wheelchair-bound child. Until now, I got away with a home-adapted carriage, but she’s gotten too big, and she needs more support. Any advice on how to break through this barrier and do what’s right for my child? I’m sure many moms have felt as I do, and I would appreciate some supportive advice. Or, if there is any wheelchair out there that is less blatantly handicapped-looking, please let me know.
Thanks,
Shayna C.
Dear Shayna,
Based on your letter, it’s obvious that you care very deeply for your daughter and would do anything for her, but you need to accept her abilities at this point. That doesn’t mean you should give up hope – hope and emunah are crucial tools that you need to help your daughter reach her full potential. Only Hakadosh Baruch Hu knows what your daughter is fully capable of, but right now, it seems she needs a wheelchair. A wheelchair will allow her the best positioning options; this can improve her breathing, eating and communicating. It will allow her to be on a similar level (height-wise) as her peers, and it will give her better options to socialize with other children. By giving her the support she needs, she can build up her muscles, which may improve her motor abilities further.
Don’t think of it as confining her to a wheelchair; you are going to be giving your daughter greater options and greater independence by putting her in wheelchair at this point.
I realize that it’s easier for the mind to accept than the heart, so I’ve enclosed some pictures of strollers/inserts that are more child-friendly. The Cruiser comes in some very pretty colors and folds like a stroller. Feel free to show these pictures to your daughter’s therapists and see if they are appropriate for her.
I hope this helps; may you see much nachas from your daugher.
HN
New York, NY
Convaid Cruiser Transit Ready
Order online at www.abilitations.com or 1-800-845-1535
Sit up and Go
Order online at www.sammonspreston.com or 800-665-9200
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